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Thursday, March 13, 2008

Disability in Advertising and Adaptive Sports

Regular readers of this blog will know I am enamored with adaptive sports--specifically skiing and kayaking. The reason I became interested in adaptive sports was basic: after thirty years of of pushing a wheelchair my shoulders began to hurt on a regular basis. A trip to the medical library to browse rehabilitation journals revealed what I already knew: the vast majority of people who are paralyzed for decades experience chronic shoulder pain. Based on my reading, I conclude the only known way to relieve chronic pain was to strengthen the entire shoulder or stop pushing a wheelchair. This knowledge combined with my niece who is a program director at Vermont Adaptive led me to learn how to kayak and ski. I love both activities. Since I began kayaking and skiing I have not experienced any pain in my shoulders because my overall strength has improved. I have also met some wonderful people, specifically the volunteers at Vermont Adaptive and many kayakers who paddle the Hudson River.

My skiing and kayaking have made me pay careful attention to the social ramifications of adaptive sports. I am extremely wary of being stereotyped--that is being perceived as possessing super human traits such as intense fortitude and perseverance often associated with athletically active disabled people. I assure you I do not possess any such traits. I am your average and boring middle aged man--a fact my teenage son often reminds me of. This concern was recently echoed by Simi Linton in her blog Disability Culture Watch. Linton is a New York City based disability rights activist, gifted scholar, and one of my favorite authors (her recent memoir, My Body Politic, is a wonderful book). In a recent blog entry Linton noted that advertisers have begun to use disabled athletes to sell products. She specifically refers to Sara Reinersten, a disabled triathlete and the star of Murderball, Mark Zupan who are used to sell a variety of products.

Advertisers are doing exactly what they are paid to do: using anything and anyone they can to influence people to buy a product. I know this all too well as this is exactly what my father did his entire business career. I have no problem with this. But Linton makes an astute observation, do the images used by advertisers "set up a false divide between those deemed robust and those the general public has been schooled to read as un-robust disabled people. The images buy into notions of fitness that privilege certain bodies. I think the advertisers think they are doing something progressive and liberal, but, instead, may be reiterating stereotypes of physical prowess, albeit with a slightly wider pool of acceptability".

Linton's words are sobering to me. Does society think less of non athletic or physically inactive disabled people? I do not think society has such a nuanced understanding of disability. Based on using a wheelchair for the last thirty years, it is my belief that society, that is the average able bodied person, thinks of one thing when they see a disabled person: limits. What a person cannot do rather than what can be done. Adaptive sports turns this thinking upside down. How do I know this? This point was made by son. He is perplexed and annoyed that his friends think I am cool. I told him this was based on my appearance being so different--I have a tattoo and long hair tied into a pony tail. When I told him this he shook his head in a way that only a teenager can do that signals how amazingly stupid his father is. He replied: "Dad, everyone assumes disabled people can't do anything. It has nothing to do with the way you look because the only thing people see is a wheelchair".

My son's observation made me realize Linton was onto something but not the dichotomy she identified between active and inactive disabled people. Society not only associates inability with a wheelchair but thinks the person "in a wheelchair" never gets out of a wheelchair. I have often been asked "were you born in a chair?" or "how long have you been in a chair?". The focus here is squarely on the chair and the assumption that there are millions of things that cannot be done. These assumptions are not made when a person who uses a wheelchair is in a sit ski or kayak. When one is not "in a chair" people think of what one can do rather than what cannot be done. Getting out of a wheelchair and into a sit ski is a radical social transformation--one that is normalizing. I simply become another skier. Few ask me about the sit ski though I will acknowledge some may perceive me as cool. But the majority people I have met skiing think I am just another person on the slopes. I know this because we talk about ordinary things--the weather, the view when we get off the chair lift, the conditions of the terrain etc. Rarely, if ever, do people ask me anything related to my disability when I am in a sit ski. At issue is one thing: skiing. But when I return to the ski lodge and my wheelchair the social perception changes--I return to my socially inferior status, the man "in a wheelchair". Getting out of my wheelchair then is the key to social equality. This is odd to me, a thought that would not have come to me without my son because I perceive my wheelchair as a liberating tool.

Wednesday, March 12, 2008

Ashley Treatment: First Year Anniversary

Not much has changed in the last year. has a follow up story by Amy Burkholder about the Ashley Treatment. The comments posted to the story and appended interview with the "Pillow Angel" parents are overwhelmingly supportive of the so called Ashley Treatment. Those opposed to the parents decision are characterized as radicals and the parents refuse to reveal their identity because they want to protect themselves and their children from the media frenzy.

After reading the CNN story and the interview with Ashley X parents I am truly depressed. Disability rights is simply not making any progress. Sadly I think the social acceptance of the civil rights of disabled people has regressed substantially in the last year. The Ashley Treatment is an extreme but one that highlights the divide between those with and those without a disability has widened. The mainstream media repeats and accepts as fact what Ashley X parents write. Millions of people, if Ashley X parents are to be believed, have visited their website and all except for a tiny minority of disability rights activists support them.

I find the position of the parents self serving. They bemoan the media frenzy that surrounds them yet keep their blog active and grant interviews to CNN. They chastise disability rights activists and scholars for their extreme views yet maintain parents seeking the Ashley Treatment must be diligent and tenacious. The parents estimate under 1 % of children with a disability are like Ashley X. No foundation in fact exists for such a figure.

Those that oppose their decision are characterized as a "loud minority", infuriated that their decision does not conform to a disability rights ideology. This is pure bull shit. I am sorry to use such vulgar words but I am perplexed how the parents can dismiss the entire disability community. I find comments such as the following misleading at best: "We are in the unfortunate situation today where activists with political power and motivated by their ideology have successfully taken a potentially helpful option away from families whose pillow angels might benefit". If disability rights activists had such power it is news to me. In fact, the disability rights perspective has been totally ignored by the media and medical ethics professionals.

The parents maintain Ashley X and people with all other disabilities are vastly different--a chasm separates the two and no slippery slope exists. This may help the parents sleep at night and dismiss the views of others without thought but such a position is dead wrong. Slippery slopes exist and I for one do not consider my social condition to be any different from Ashley X. I know people often think I cannot walk and as a result cannot think. Whether I like it or not I carry the same stigma as Ashley X. My life and Ashley X life is simply not valued by mainstream society.

The future for disability rights is grim and people such as Ashley X parents are of no help. Like Christopher Reeve, they are so overwhelmed by their own interests they refuse to consider the broader implications of their views. Ashley X parents are even considering writing a book and telling their story in other ways. I shudder to think of the options available and I cannot think of one positive thing that could result. The Ashley Treatment thus remains as depressing today as it was a year ago.